This past weekend we went to our local "Hole- In- The- Wall- Camp". These are the camps that Paul Newman's product lines help to support. These camps are amazing in so many ways. To start, they are tailored to sick children. These people realize that it's not fair or fun to live in pain every day, to have to spend so much time at the hospital or doctor's offices, and have to go through frequent testing. They also realize that many of these kids are on so many meds that they couldn't go to a "regular" camp. These types of camps are filled with counselors that volunteer- because they want to. They are medical students, nurses, doctors. They also have a disease-specific doctor on hand because you just never know what may happen. It's a safe haven, filled with love. To have a family weekend is amazing! Emily had gone to this camp twice for a week each time. She was so sad to leave it! She looked forward to this opportunity to share it with us.
It's also a wonderful experience to get together with other people that are going through similar situations. You really feel a strong sense of community. They want the parents to do their own thing to recharge. Many of us are happiest just watching our kids have fun :) I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc. It was really cool watching Emily do all of the chants and the little cheers they had. Like she totally belonged. That was cool. Another "Mom Moment" happened during the opening campfire. One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people. (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.) For whatever reason, Emily was one of those 3 special people. I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did. I suppose she could have remembered her from last summer, but Em looks so different. Any which way, it was truly amazing, and really touching. Em also really enjoyed being in a bed right next to my bed :) Sleeping only 3 feet away from Mom makes her feel safe. <3 She did have a food meltdown on the first night, but otherwise she had an amazing weekend.
The family "Pals" are volunteers that follow the kids around. They specialize in making the kids feel loved and happy. They bond with the family, but especially the kids. They have them "serve" the family, hold open doors- totally spoil the family. We had 3 pals. Our pal, Brittany, has Lupus. She told us that she refused to take her Prednisone, which caused kidney failure. She spent half of her time with us, and half in the arts and crafts area. She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair. Our other pals were pushing her around. I think it was a blessing having her. She could understand better than the other two how Emily felt. She was a camp kid, volunteering because she loved the camp and the way it made her feel. Our pal Jake was in school working on dual masters in business & sports. He & Zach got along very well :) Our last pal was Stephanie. She was my favorite :) She was only 21... close to Gir's age. She's a medical student, working her way through college in a lab that's doing research testing for Lupus. I was so excited to hear that!!! She was down to Earth like a good teenager, able to fit in with the kids like she was 16. Not only did she and Gir get along well, but she & Emily did, too. Em schooled her in rheumatology. I think they impressed each other. It was lovely to meet them all, and a wonderful treat getting to know them. Many special people make up this camp!
My last bit for the evening... Well, we're finally on the way to getting my son "figured out". I had noticed a while ago that his hands look puffy. While at camp, another mom said the same thing. (Thank you again for saying it!!! I never would have thought to jump on it otherwise.) After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone. So I thought, hmmm, she's here in a professional capacity, volunteering her time. It couldn't hurt to ask her to look him over, could it? She was totally cool about it. She said that he's hypermobile, to start with. And she said that, judging by his reaction, she believes he has arthritis in his finger. She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him. I had his blood drawn yesterday for labwork. I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA. (Is that wrong?) Hopefully those will be back in the next few days. Those should tell us if there's anything going on, though not necessarily. I requested the lab send a copy to the rheumy. That should help to get things started. I really, really hope we're wrong. I really want to be. We shall see. We're just taking it all one day at a time.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Wednesday, October 5, 2011
Family Camp Was Amazing!
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Sounds like a wonderful time was had by all! I am so very pleased that the who family was taken care of while keeping the focus on the kids. What a wonderful camp!!ReplyDelete
It would be wonderful to find out what is happening with your son. Nothing more heartbreaking than knowing something is wrong and not being sure what. Being newly diagnosed I am still learning all I need to with RA and know very little about the testing. I do know however that I am sero-negative and the only positive test that came up for me was the Anti-CCP. Not sure if that is covered with your inflammatory panel or the other tests but thought better to mention it just in case. I hope you get to the bottom of things quickly with your son. I think fear of the unknown is greater than the known. ((HUGS)) Saw the camp pics on facebook and everyone seemed so happy..so richly deserved! Take Care